Care4Conway: Festivities

Saturday, July 4, 2009

Festivities

We're home, bathed and in bed after a long day of what was supposed to be jammed packed with fun but ended up a bit muted due to the weather. We skipped the parade, figuring a few tootsie rolls weren't worth the soaking wet kids and stuff--not how we wanted to start our day. We went over to Grandma and Grandpa's house instead and hung out there. After naps, the weather cleared some so I headed to the carnival with the girls and Greg planned to come up at dinner time and then stay the evening listening to Gavin DeGraw and then fireworks. The kids had fun riding the rides, but at $4 per ride, per kid, that was short lived. Then on to the free inflatables section and face painting. We hung out there awhile and ran into a few friends and stayed long enough to fill up on food and get wet and muddy (which utterly ruined the whole experience for Mary Kathleen--apparently she's not our outdoorsy kid!). After that we headed over to listen to the headlining act, Gavin DeGraw. About two songs into his set, Connie flicks a large bug off his neck and immediately started screaming. Turns out, it was a bee of some sort and it left it's stinger in his jugular vein! Greg got it out while I restrained the poor kid and tried to calm him down. It swelled up like a bite does and got really red, but our wiser friend told us that it was normal and if he were "allergic" he'd be having trouble breathing. He wasn't. Then we see lightning and see a storm coming from the northwest. We packed up and headed out but before we got to our car, we were pretty soaked (despite the umbrellas and all). As we were leaving the grounds, they started ushering everyone out and all those just arriving to catch the fireworks were told that the parks were closing and that the fireworks were canceled. What a bummer!

I'll try to get some pics up here soon but I used my dad's camera today and don't have the right cord to transfer them over to my computer. I hope they are good. I tried to get a lot of action shots of the girls on the "big" rides. For as meek and timid as they act most of the time, those kids are sure thrill seekers when it comes to stuff like that. I think as long as you tell Mookie it's going to be fun, she'd try anything once!

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Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.